Support for Emily’s Brain Surgery for IIH

My sister was diagnosed July 2023 with Pseudo Tumor Cerebri or also known as Idiopathic Intracranial Hypertension. After failed attempts at medicine treatments and numerous Lumbar Punctures nothing has worked. Unfortunately, the next steps with be her Neurosurgeon placing a brain shunt in the frontal part of her brain that will have a catheter attached. This device/procedure will help take the Cerebral Spinal Fluid off of her brain. She will be going for her updated MRI on June 19th and once that is reviewed she will be given a surgery date. She will be out of work and though luckily she will have FMLA she will have a hard time with medical bills, hospital stays, etc. If you know my sister then you know she is the last to ask for help so that’s where her family comes in. I have posted below the most recent update from her. Please continue to keep her and the family in your prayers.

Yesterday I didn’t get the news I wanted. I’m sorry if I haven’t reached out to everyone just yet but updating on here seems to be easier as my mind is going in a million directions. After more tests that were ran my Neurosurgeon called me Tuesday and told me he wanted me to come in to go over results and plan of care. Unfortunately the medicine treatment hasn’t been working to keep the build up of CSF off my brain. It’s now affected my vision. I have severe papilledema. I’ve slowly been loosing my vision. If my optic nerves are damaged anymore I could go blind. My Neurosurgeon believes our next step will be placing a VP shunt. Normally he stated he would rather do the shunt through my back into my stomach but during all this mess I also found out I have a ACM -Arnold Chiari Malformation which is when the back part of the brain (cerebellum) pushes through the opening in the back of the skull. With having that it limits the treatment I can receive. So the only option is to go through my brain and place the shunt there. I knew once I was diagnosed with this disease that this was a possibility. I guess it didn’t seem real until I heard the words come straight from the doctors mouth. I’ll be honest my heart sunk. There are tons of risks but this is the only option I have to save my vision and life. I think the hardest thing since I was diagnosed is that it’s idiopathic. Meaning the doctors don’t know what causes it and currently there is no cure for it. I’m honestly scared. I’ll be vulnerable and admit that I am honestly scared. I’m scared of the unknown. I’m scared for my boys. I’m scared for Brittney. I’m scared for my family. My number one goal in life has always been to be the best mother I can be. I’ve always been my boys protectors. My heart is heavy… if something happens to me I won’t be able to protect them anymore. My momma heart is struggling. So please if you can say a little prayer for me and my family or send good vibes our way please do. The next few months will be hard.